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Silence on Hepatitis: Where's the Leadership?

May 15, 2008

On Monday, May 19, Project Inform will join hepatitis advocates around the globe in recognizing "World Hepatitis Awareness Day." This day will highlight the severity of the hepatitis pandemic, through media campaigns, rallies, and educational events. We will also call on elected officials to take action and leadership in creating hepatitis education, prevention, diagnosis, care, and treatment programs.

In the United States, the statistics are staggering. There are an estimated 6 million people with the hepatitis B or C virus. Most Americans living with hepatitis C are unaware of their infection. Chronic viral hepatitis is the leading cause of liver cancer, now among the top 10 killers of Americans over the age of 25. In addition, around 30 percent of people living with HIV are co-infected with hepatitis C, and end-stage liver disease is now a leading cause of death for people with HIV/AIDS.

Almost everyone is affected by the hepatitis epidemic in some way and the LGBT community is no exception. My partner Gil passed away seven years ago at the age of 33 from chronic hepatitis B and liver cancer. Two of my family members are living with hepatitis C and many of my HIV-positive friends are co-infected with the virus. The disease has hit our community hard and we don't talk about it as much as we should.

Tragically, the federal response to this epidemic has been abysmal and reminiscent of the early years of HIV/AIDS. Despite repeated requests from advocates, President Bush has refused to offer a proclamation or statement recognizing even one hepatitis awareness day during his tenure. The entire federal budget for all viral hepatitis programs is a mere $17 million per year and, despite growing need, the president has called for a cut in next year's funding.

Only a handful of members of Congress have co-sponsored the Hepatitis C Epidemic Control and Prevention Act, a bill that would mount a comprehensive national testing and prevention strategy. Uninsured and underinsured people living with hepatitis B and C have no assistance with the expensive drugs and care necessary to maintain their health. Media outlets around the country have refused to air public service announcements about hepatitis C because of the stigma associated with the disease and injection drug use.

Does the slogan "Silence Equals Death" come to mind?

In response to this failed leadership and the devastating impact of the disease, Project Inform is actively engaged in hepatitis advocacy, with a strong focus on hepatitis C. We have partnered with advocates around the country to demand more federal funding and a comprehensive plan to fight the epidemic.

As a member of the California Hepatitis Alliance, a statewide advocacy coalition working to improve California's response to hepatitis B and hepatitis C, we are working at the state level as well. We strongly support Assemblywoman Fiona Ma's (D-San Francisco) tireless efforts to fight hepatitis B and legislation recently introduced by Assemblyman Mervyn Dymally (D-Compton) that would require California to create a strategic viral hepatitis plan.

We also work closely with some amazing local hepatitis advocates -- including representatives from the American Liver Foundation, the Drug Policy Alliance, City College of San Francisco, Asian and Pacific Islander Wellness Center, and the Hepatitis C Support Project. Our team has worked with Mayor Gavin Newsom's office to recognize Hepatitis Awareness Day in San Francisco and will advocate for the city to serve as a model in providing hepatitis education, prevention, care, and treatment services.

We have brought our extensive grassroots organizing experience to the national hepatitis C movement. Last year, we co-founded Hepatitis C Advocates United, the first national grassroots network focused on urging the federal government to take action against the disease. This network, now over 300 members strong, has brought together people living with hepatitis C, service providers, and other advocates to create grassroots strategies aimed at convincing Congress and the Bush administration to provide funding and legislation needed to combat the epidemic. The group is participating in World Hepatitis Awareness Day by organizing people to call Congress on May 19 to demand action on fighting the disease.

You can be a part of this important awareness day by making a few phone calls or sending a few e-mails. Ask House Speaker Nancy Pelosi (D-San Francisco) to prioritize increased hepatitis funding in next year's spending bill. Urge Senator Dianne Feinstein (D-California) to co-sponsor the Hepatitis C Epidemic Control and Prevention Act. Thank Senator Barbara Boxer (D-California) for co-sponsoring the bill and ask her to be the Senate's champion on all viral hepatitis issues. Thank Ma for her leadership at the state level and ask how you can help.

To learn more about World Hepatitis Awareness Day, go to

For more information about getting involved in hepatitis advocacy, contact Ryan Clary at 415-558-8669, x224 or by email.

Ryan Clary is Director of Public Policy for Project Inform.

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This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
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